WORLD PI WEEK 22-29 April
In this week, patient organisations all over the world raise awareness of Primary Immune Deficiencies in their country.
IDFA are partnering with CIRCA to produce an Immunodeficiency Storybook. Whether you are a patient or carer, send us some photos and tell us your story
Join the World PI Week 2019 “Putting primary immunodeficiency patients at the centre of their care”!
On the last week of April (22-29 April), people from around the world celebrate the World PI Week campaign, to raise awareness and understanding of primary immunodeficiency.
To assist in “Putting primary immunodeficiency patients at the centre of their care”, our goals are to bring about change in policy and healthcare practice to improve quality of life of patients and their families through the following:
- by introducing newborn screening for SCID (the bubble boy disease)
- by addressing the NBA Criteria for immunoglobulin Use
- Access to treatments
- by making access to immunoglobulin
- by addressing the NBA Criteria for immunoglobulin (Ig) Use and making access to Ig therapies available for those who need it most
- by making access to SCIg (subcutaneous immunoglobulin treatment) easier
- Access to care
- by making Primary Immune Deficiencies recognisable and accessible to government agencies
- e.g. NDIS
- e. g. Centrelink
- Looking at ways patients can be “linked” or “recognised” in the health system to enable faster access to allied healthcare services
- Patient organisation resources:
- Seeking government funding for IDFA to continue to provide support, education, resources and advocacy to our members
- Increasing grants, donations and fundraising to enable organisational growth to provide patient services
This April, IDFA seeks to raise money to continue the advocacy, resources and services we provide to our members. These include education, advocacy and support by providing conferences, patient meetings, PI resources, patient packs, healthcare professional packs and support services.
The 10 Warning signs is a simple diagnostic tool to seek medical advice:
1. Eight or more ear infections within one year
2. Two or more serious sinus infections within one year
3. Two or more months on antibiotics with little effect
4. Two or more pneumonias within one year
5. Two or more deep seated infections such as sepsis, meningitis or cellulitis
6. Recurrent deep skin or organ abscesses
7. Persistent thrush in mouth or elsewhere on skin after age one
8. Need for intravenous antibiotics to clear infections
9. Failure of an infant to gain weight or grow normally
10. Family history of primary immunodeficiency
SIGN the SCID NEWBORN SCREENING PETITION here
ORDER the PI AWARENESS PIN here
DONATE TO IDFA: Donate now
VOLUNTEER TO DISTRIBUTE POSTERS [email protected]
VOLUNTEER TO SELL THE PIN ($10 tax deductible) [email protected]
HOLD A FUNDRAISING EVENT Morning Tea, Black and White day? Gold coin day? [email protected] / call 1800 100 198
The IDFA encourage members to raise awareness by taking an IDFA Healthcare Professional Resource Packs to their GP, Immunologist, hospital or other healthcare professionals. The pack contains the The IDF Patient and Family Handbook – Australasian Edition. This publication is endorsed by the Australasian Society of Clinical Immunology and Allergy (ASCIA) with a foreword from Dr Melanie Wong, ASCIA Chair 2014-2016, and IDFA Medical Advisory Chair.ORDER the Handbook and World PI Week resource packs.
BUSINESS DETAILS: IDFA is a NFP organisation with DGR status. View our business details